Lovely To Be Well Dressed Again.

 
 Vilhelm Bjerke Petersen.
http://en.wikipedia.org/wiki/Vilhelm_Bjerke-Petersen

It’s windy, rainy intensely gray today, on Monday Richie and I ate two big, tasty strawberries from our plant on the bedroom balustrade, we have had the plant for over 11 years.

It is a plant we had in the Haarlemmerdijk; we moved away in 2000, this plant has consistently produced good strawberries.

Richie has made a wonderful discovery, which will have a positive effect on me and my clothes.

Yesterday Richie cut the bottom out of a baggy pair of trousers; he also cut the waistband, cutting a large part of the bottom out of trousers means it is much easier to get them on.

Up to now a lot of my clothes have got ripped being put on me, I get dressed in the shower chair, Richie has to somehow pull trousers up over the hard plastic chair.

That causes strain on the clothes which end up getting ripped, better to remove than to rip trousers.

What is good about this is it makes dressing me easier for Richie and it means that my trousers will finally fit well again.

All Richie has to do is pull the trousers up my legs, then lay it over me up to my waist and tuck the sides and waistband around me.

This is a wonderful development; it means that I will be able to wear smart black trousers and black jeans again.

Beautiful prospect, not be bundled up like a poor invalid, it will be lovely to be well dressed again.

Hot Monday.

Carribean Caterpillars with Spade Fish
Mairead McGeown

It is hot summer here today, 30 degrees, blue skies and sunshine; there is no direct sunshine on our building.

Our apartment faces to the east so we only have sunshine briefly in the mornings until 11 then its gone, that’s a shame as sunshine in late afternoon is so enjoyable.

We have curtains closed to keep it cool inside which helps some, but does nothing to diminish the temperature.

Just heard that there maybe thunderstorms tonight, which may bring the temperature down again.

Both windows in the bedroom are open to catch the breeze, the fan is right next to me, so for now I am doing alright.

Richie told me he is buying a small airco unit, which should be delivered here on Wednesday; I think that will do the trick.

Sounds like hot nights will be bearable for me, with the airco by my bed, and the mosquito net to protect me from bites.

Looking forward to wearing my summer t shirts and enjoying the good weather while it is here.

The warmth will be good for our strawberry plants, looking forward to eating more delicious strawberries, so nice to share some with Richie every day, love seeing him pick them.

Who knows anything is possible.

Berkshire, England.

Quite amazing how things can change around so quickly, week before last I was quite down, thinking the paperwork had not arrived at the council yet.

Felt so let down and just could not understand that three weeks later the three people who had been here on the 17 September had not made sure their paperwork was done quickly.

Welzorg, Summit and ARCA had all assured us that they would do everything in their power to speed the process up.

Really had to pinch myself as thought I was in a bad dream, on the 17 September they had all assured Richie and me that the whole process would go as fast as possible.

And here it was three weeks later and instead of good news, it was the worse possible.

One week later and it is all different again, this time it is good news, was so excited to hear that on the 29 October I would get the adapted seat attached to my electric chair.

We talked about it the whole day Thursday, kept coming back to the moment of the telephone call.

The funny thing was that at first I thought the appointment was going to be on the 29 of November.

Tried to not be too down about having to wait for so long, so was delighted when I repeated what I thought Michelle had said, only to hear her say no not November on 29 October.

That made it very good, and the news about the paperwork not being sent quickly has totally faded into the background now.

The 29 October is the big day to work towards now, shame it is already so cold, it will not stop me from going out.

Now to organise warm clothes to wear, yippee I have the very enjoyable task of organising warm clothes to go out in.

Today the sun is shining and the sky is blue, no window open now as it is too cold for that.

Guess the blue sky and sunshine is a big clue that it has got very cold indeed, on the window ledge the strawberry plant is doing it's best to cope with he cold wind.

Wonder if the last green strawberries will ripen, who knows anything is possible now.

That is a good feeling to have, and that is the one I shall take with me from today.

Have a good day too.

Good news and Sunshine, Blue Skies and Strawberries, Butterflies and Bees.

Pop Art.


Slept well last night until something woke me up, from the light outside it was before 6 am.

Just as I was thinking what now Richie got up, so when he returned I asked him for THC which was successful in helping me get back off to sleep.

Had a strange dream about being stuck somewhere in the middle of someone’s endless rambling conversation.

When I told Richie he suggested that is was maybe someone talking outside, we do get alot of people who have to stand under our bedroom window talking loudly.

Weird that they never seem to mind who hears them, it is like people who go on the Radio and TV.

And tell millions of listeners their secrets which up to that moment no one not even family and friends knew.

Oh well just have to learn to live with these street 'performances' maybe I will even see the funny side.

Ton Peeks,from the RCA, (Amsterdam Rehabilitation Clinic) came around 30 minutes earlier today, yesterday it slept from his mind, because he was so busy at the Rehabilitation Clinic.

He was so embarrassed about this, and suggested he came round today at 12.15, so I was very surprised when the phone rang and Ton said he was at the front door.

Luckily Richie arrived home with the dogs so Ton could come up and inspect the wound.

Ton was very pleased it is barely 1 mm, very tiny and the skin looks very good around the healing wound.

He will be back on 7 October, when we all hope that it will be totally healed up and I can start to sit again.

If all goes well the adapted wheelchair should be ready not too long after Ton’s inspection.

Richie and I are very happy about this, and as if to highlight our happiness the weather is exceptionally good.

Blue skies, sunshine, strawberries,bees and butterflies on the flowers by my bedroom window and it is warm.

Richie took the dogs around the block in a short sleeved t-shirt and Ton, too had a short sleeved shirt on.

He took a photo for his files and to show Doctor Stolwijk the progress, Ton is delighted and very happy to come by weekly when I start to sit again.

I feel optimistic now, that soon I will be able to go out again something I was not convinced of before last week.

Mathilde, lmy physiotherapist was happy to hear the good news when she came round for our exercise session.

Happy days are ahead, know this for sure now, last week Thursday modelling session showed me that sitting in my wheelchair was a realistic prospect.

Something that will really happen and not just a day dream but a real prospect.

I am so happy, will enjoy today very much.

Hope you do too.

Tomato plant.

Pepper plant.

Pepper plant.

Potato plant.

Gareth came round again yesterday at 14.30 and stayed until 18.30 and as always with a particularly good visit from a good friend the time just flew by and he had to leave again.

Very pleasant talking with Gareth and enjoying the delicious strawberries he brought with him and the chocolate.

I was advised to have a strawberry with a piece of chocolate which was very nice indeed; it was dark chocolate with lemon.

Yummy!

Certainly could cope with alot of visits like that.

I am in lots of pain today there are not too many parts of my body that are not painful, think my face and neck and my arms from shoulder to elbow are not painful.

Everything else hurts like hell, the discomfort is increased by the hot muggy weather so feel hot, sticky and longing for a breeze.

Trying to not focus on my pain but it is difficult to do so keep spending to much energy on it and have to adjust my focus time and again and tell myself to think about other things.

This morning realised again how little movement I have, can only lift my head and my arms.

If I want to raise abit of my body I need the handle that hangs down over the bed then I can get my shoulders off the bed.

Tried to see if I could do this on my own without the aid and could not do anything but lift my head up.

It is really strange to find myself in this situation as it is something that I have read about.

Did not expect that I would be experiencing it myself, sadly, so now I know what it is like to be very handicapped and 100 % dependant on others.

And that is not easy at all, in fact it is bloody difficult and for all concerned, took me ages to get used to the idea of someone else washing and dressing me.

Still do not like it at all, the one good thing for me is that Richie does it all and he is so good that it is much less intrusive than the agency carers

Now that I have personal experience I know how one manages, you just do, you just get on with it and hope for the best of times even in this ghastly situation.

I have managed by being myself and staying that way too, think I used to worry that everything even that would change drastically and unrecognizably.

The changes to our lives have been immense; think we are still reeling from the speed and the intensity of the progression of the MS.

The biggest frustration is not being able to do anything to change what is happening, think that is part of our conditioning.

We tend to think that anything can be solved or cured or mended, so something like MS is a terrible shock to everyone coming into contact with someone with MS.

Guess that is why some people can’t bear to be in touch, it is not they suddenly don’t like me.

No it most likely is fear and the realisation that there is nothing they can do to change things, plus the fear of confronting something that is scary.

As if there was a risk of getting MS just by being near to someone with MS, as if proximity alone would be enough.

Have lost a few people that I thought were good friends, they have all not said anything just do not get in touch anymore.

My email address is most likely on the blocked list so there really is nothing that I can do to change this state of affairs.

It is very sad.

Think that it is best to put away all ideas of changing the situation either of the MS or the ex friends and focus on relaxing and enjoying the moment.

Bloody hard to do especially today

William Blake 'Augeries of Innocence'.










Yesterday was quite a good day especially after the pancakes which certainly brightened things up.

We both had a very relaxed afternoon and evening, Richie made fresh pasta with aubergine, tomatoes, courgette and broccoli with halumi and a sprinkling of grated Dutch goat cheese over the top.

Last night was fairly amusing TV, we watched the final of this years Apprentice, the big surprise was that the favourite did not win.

Kate, the one Ruby Wax chooses as winner came second, Ruby could not understand that as she had fallen in love with Kate.

Ruby pointed out that Kate had American teeth, which was true; Kate has an amazing set of dazzling teeth.

Surprised myself by crying again literally just before Richie switched off the light, watching him walking around doing last minute things before bed triggered that off big time.

Was thinking about walking and what that would feel like and started to cry, not surprised really as I should have left that wound in peace.

Luckily a kiss and a determination to shut the sad thoughts away and get back to the dreamy relaxed state where I wanted to be, not crying over not being able to walk.

It worked and I was went off to sleep and maybe dreamt too.

Slept until 10 am so think that it was a successful night, where I slept well after putting an old nightmare to sleep.

Sure it may come back from time to time as I am sure that I will never totally accept that I will not be walking again.

Last night received several very supportive comments from blog friends telling me that they feel I have a gift.

That is lovely to hear, I am very touched that it is seen like that and happy if I can help others.

Do think it is very mutual, the blog world and my blog friends give me such tremendous support.

This support helps me to come to terms with life as it is now; love is passed around and gets charged up as it circulates.

Mutual aid and support keeps everything going and is proof for me that we do need each other.

We need to care and support each other; there is nothing more worthwhile and important for us and the planet.

Richie looked after me very well by getting THC for me from the Vaporiser, as soon as I asked for some this morning.

Think these nipped potential problems in the bud, and meant that I did not focus on the pain and discomfort.

THC does not take away pain but it does shift the emphasis and allows relaxation which also minimises pain.

Because of the weed I have a good a life as possible given my physical restrictions and the fact that I have been in bed since the 21 August last year.

My life would not be as good without the weed as I would either be in constant pain and distress or zonked out and no longer able to take part in life around me.

Really find it hard to accept that Texas will not allow medicinal marijuana but will give BR more than enough opiates to keep him zonked and not able to take a full part in life around him.

But not allow him to use marijuana which would relax him and give him relief from pain and give him a good quality of life without having to take a whole arsenal of pills.

Please visit BR and Steve and leave them a message of support @

http://spinfortunaswheel.blogspot.com/

Find this level of inhumanity very hard to take and makes me hope for change as this is something that needs action as soon as possible.

This is something very important and vital which needs to be looked after real soon.

Pain is of course part of our human existence, it is not something that can be fully conquered but it should also not dominate our lives otherwise we do not have a life.

We can control the pain I feel with the weed which allows me to relax and have a good appetite as well as sleep well.

My life has now totally changed in the last three years; I no longer feel very dynamic but guess that is something that I have to redefine for myself.

We all need a positive self image, this you create yourself and is part reality and partly fantasy but becomes more real as you go along.

For the most part I do not feel so different from the person who went to St. Andrew’s School in Maraval, Port of Spain, and Trinidad all those years ago.

I am still endlessly curious about the people and the world around me, hope that never changes.

I am still endlessly curious everyday about the world and its people.